Life, travel, and living beyond your expectations

Finding kinship in a breast cancer support group

Last week, I reached another milestone in this so-called journey. I completed radiation treatment #15 out of 30 on Wednesday, so I am officially now into the second half of treatment. To date, it has been 124 days since my official breast cancer diagnosis. That’s 17 weeks and 5 days, or 89 weekdays and 35 weekend days, or 2,976 hours. You get my point. It’s been a long time.

Fifteen radiation treatments work out to 3 weeks in regular time (treatments are only on weekdays). That has given me plenty of time to sit in ugly hospital gowns and contemplate my present and my future. The cumulative effects of the radiation have started to show. I can hide the dark circles under my eyes with makeup, but the darkening of my skin and the nerve pain in my chest aren’t as easily masked. I hurt. All the time. It’s like a worsening sunburn that I can do nothing about but watch it take over the left side of my chest.

My husband and I also spend a lot of time talking about the present and the future, and what it means to go through the cancer process at my age. He pointed out that, although I have plenty of support around me, it is still a lonely process to get through. I can explain to someone else how everything feels, but it is not the same as connecting with someone who has been there. So, on my 15th treatment – my halfway mark – I attended a breast cancer support group at the hospital.

The timing was coincidental. I didn’t specifically go to the group because it was my halfway mark, but I am glad the timing worked out. Up until this point, I thought I could do it alone. Yes, I have support at home and at work. Yes, I have people in my life who will listen to whatever I want to share. But it’s not the same as sitting with other women who know exactly what it feels like to talk to a doctor about whether you can or should keep your breast.

The group meets once a month one floor up from where I get my radiation treatment. The conference room looks like any modern-day meeting space, with a rectangular table, chairs, and an AV system. The words intimate or comforting are not words I would use to describe it; more like sterile and brightly-lit.

As we filed in and signed our name on the sign-in sheet, we slowly broke the ice with each other. What’s your name? First time here? Where are you from? Are you still in treatment? ER/PR/HER2 status? Are you on Tamoxifen? How are you doing with the side effects?

When the real talking began, I was floored at how much we all have in common besides an understanding of the medical jargon. The room held a range of breast cancer diagnoses – from Stage 0 ductal carcinoma in situ (DCIS) to Stage 3 invasive ductal carcinoma (IDC). I had assumed that our stories would be so different; that we would find so many differences in our thoughts and feelings about what is or was happening to us.

As usual, my assumptions were dead wrong. “I know exactly how you feel. I felt the same way until treatment ended (a month ago),” said B., who was diagnosed in the spring with Stage 3 cancer. She, too, found a lump in her breast but her road took her to a double mastectomy, chemo, and radiation. “I felt like this would never end and that I would never get my life back, but I’m starting to feel normal again.”

That was in response to me saying that I feel like cancer is taking over my life. Everything relates to cancer – my schedule, my diet, my exercise, my sleep, etc., etc. She nodded her head again and again, and looked at me with understanding. It took me a minute to realize that, although she had endured so much more pain than I had, it was the same feelings of mourning that loss of normal life and coming to terms that cancer makes you different to everyone around you.

D., who also found a lump in her breast but healing from a colon resection meant waiting almost a full month before any doctor would do diagnostics on it, gave me the best insight. She was 2 years post-diagnosis and had waited a year to even join a support group. “You have to be okay with the new normal,” she said. “It will always be with you. Like when you get a massage and have to check off that breast cancer box and then have to tell them more about it. Life will not be the same. You are not the same person anymore. Find your new normal.”

That was in response to me saying that I don’t feel like myself anymore, but that everyone thinks I am still the same person. I have changed; I just don’t have the right words to articulate how. The why is obvious.

We also discussed the fear of the cancer returning. Everyone told stories about how a stomach ache, a muscle pain, or a strange physical feeling was thought to be cancer coming back for more. For example, I’ve had constant rib pain since surgery and was convinced I had bone cancer already, but my doctor and nurse assure me that I’m still healing from surgery.

B.’s oncologist had said to her that her chances of getting cancer again are either 0% or 100%, and that she had to live her life as if it was a 0% chance. I like that perspective. As I move into survivorship (they don’t call it remission anymore, nor are you ever declared “cancer-free”), I have to do everything in my power to make sure cancer doesn’t have a nice place in my body to roost. That means diet changes, even more exercise than before, getting enough sleep, and lowering my stress, among other things. But I have to live as if there is 0% chance that cancer will come back and take my life. Otherwise I am not living, I am just waiting.

This upcoming week, I will endure radiation treatments #18 to #22. The skin changes will get worse. The fatigue will get slightly worse. But I am slowly but surely marching toward the end of this horrible period in my life. I will be done with treatment by the next time my support group meets again and I can’t wait to talk about survivorship.